The New Norm: Are we ready?!

” … week 1 and week 2 … AWESOME. Amazing, actually. Rock Star Parenting, at its finest. We had a schedule. We did electives. Structure. IT WAS REALLY FUN!”

I want to openly speak here for a minute … While I try to write on the regular, I seldom post my work on WordPress, and honestly, I’m not sure why.  When quarantine first happened, I made a resolution to myself … I was SO, 100% SURE, I was going to organize this, and organize that … I was SO, 100% SURE, I was going to start posting on here again.  I was so 100%, sure.  I mean, I had two weeks to get shit done.  Time that I always complained, I never had. EVER!

I was GREAT, week 1 and week 2, probably 1/2 of week 3, it’s all a blur.  I organized the hell outta my downstairs.  My living space was finally livable again.  Immaculate.  But for the LOVE OF GOD … LIFE happens, and when you are now back to preparing (or, at the very least, SUPPOSED to prepare) all three meals,  for all three kids, sometimes 4, plus two adults who are trying their DAMNEST to stay on Keto … it becomes a little overwhelming … quite overwhelming, actually.  Being able to eat out several nights a week, was very important to this busy go go family.

And, for F’s sakes people … Let’s not forget that we are now teachers, in the literal aspect, to our children.  It’s okay … throw any challenge at me and I will try to prevail, and if I don’t, I will go down my hardest, trying.  Again … week 1 and week 2 … AWESOME. Amazing, actually.  Rock Star Parenting, at its finest.  We had a schedule.  We did electives. Structure. IT WAS REALLY FUN! Two weeks, right?! We were supposed to be “locked down” … “in quarantine” … for FOURTEEN DAYS!

THAT, is tolerable.

Week 3, week 4, 5, 6 … It became old, real fast.  Every.  Fucking.  Meal.  That’s, a lot!  Trying to maintain our living space, that I worked so hard at organizing in the beginning, is like trying to vacuum with no bag.  Shit.  Goes.  Everywhere.  The End.  It’s near impossible to TRY and keep up with my 10 year old.  I bow down to the parents that have littles at home, special needs, more than 1 … I pray for you, EVERY DAY! I pray for us all.  We all have our things.

Speaking of which … Have I mentioned how much I miss my job?!  It, literally, tears at my soul that I am not working with the kids I did.  I miss them all.  I miss my girl.  The kids at school.  My friends at work.  Marissa misses her friends.  Physical contact with other beings, other than those that live in this house. Oh that’s right … Thing 1 has returned home?!  It’s okay … the more the merrier, in my opinion, especially during these times.  I’m better than okay with it, for I also know, it won’t be forever.  Thing 2 is already planning her escape next year … Meanwhile, poor Marissa … STUCK, for at least EIGHT more years!! Insert evil laugh.

I’m seriously ADHD.  I get so bored, so fast.  I want to do what I want, when I want … I don’t want to organize because that’s what I’m “supposed to be doing” … I want to organize because I want to organize.  Having all these “beings” at home, at the same time … all on top of each other, nowhere to go … except 100 Living Room Way, or 55 Kitchen Island … hang a left to the Potty Oasis, where the motto is … “If you sprinkle when you tinkle, please be neat and wipe the seat … or your mother will hunt you down”, is NOT the ideal situation to start organizing your life.  So what happens next, is mind blowing, to me.

Weeks 7 – 10 … Ten weeks … Seventy-something days, we have finally found a “new way” in this “quarantine world”.  My youngest has a new routine, a new schedule.  Her teachers are fabulous, she is fabulous.  She doesn’t need me as much as she did in the beginning, and where I may be a little sad about it, it’s a testament to her awesome teachers for being, well … AWESOME, and for Marissa being equally as awesome, as well.  We miss everyone, but we have begun to “re-learn” each other, if you will.  That’s the best way I can describe it.  When every day is a constant, go go go, you tend to lose sight of what’s really important.  FAMILY is what is MOST important, in my opinion, and as much as you go go go FOR your family, the best you can give them, is just by being there with them.

I call my middle child, the perfect child … well, everything except her damn mouth (not sure where she gets that from <insert evil laugh>) … she typically doesn’t know when to STFU.  That’s just a cold hard, FACT!  I sometimes feel, that she feels neglected.  Don’t worry, she’s totally not … it’s just that “self-entitled” mentality that generation seems to have.  She knows she is loved.  It’s a huge reminder that it SO matters how you raise your children.  YOU are responsible for molding the little creature you created, into a responsible product of society.  However, you can only lead a horse to water, you cannot make them drink.  I feel that being forced to be home, and not on the go, 1000% of the time, has really made a difference, in how that generation of children think.  At least I see the difference in my very stubborn, almost 19 year old, daughter.

We are social beings, by nature.  It’s okay to miss our friends, what was our old norm … but it’s so beautiful to see a new norm transpiring.  It’s like the metamorphosis of a butterfly … starts out cute, goes through some “things“, makes a mess, secludes itself, and comes out this magnificent creature, on the other side.

That’s how I feel with my family. 

FAMILY2

Having a blended family is hard.  I am NOT here to sugar coat ANYTHING!  It hasn’t always been unicorns and rainbows, but we have always prevailed.  ALWAYS!  Getting thrown into a relationship, neither one was really prepared for, but both were completely committed to, had its share of challenges, to say the least.  Yes, we have battle wounds, and yes, we have scars, but YES, we have so many MORE sublime memories, which thoroughly out weigh any negative there has ever been, ever.  This “new norm” we have been faced with, is a beautiful reminder that family, is all we really need to survive, and thrive, in this crazy world, which we are ALL blessed to live.

Even my husband has been a little more helpful / playful, around the house … a little. Let’s be real, he has (or had) the thought process of, I work and provide … you be mom / wife / maid.  He had this … Me Dick.  You Jane, type mentality, but not really, any more.  As a matter of fact, as I type this … outside my kitchen window, I hear my youngest, and my husband laughing, giggling, washing their bikes, together, chasing each other with the water hose.

“Fun Fact”: That wouldn’t be happening any other week night.  That’s for damn sure.  As a matter of fact, he wouldn’t even be home yet.

I guess the point I’m getting at … I don’t know what I want more … Life as it was, or life as it could be.  Sure, I miss my friends … but do they miss me as much as I miss them?  Maybe. It’s the life we were used to!  For the first time, in a long time, I feel like people don’t care what others are doing.  I never really did, anyhow.  I’ve always cherished the life I have.  I know how delicate life can be, or is.  I know the struggles of every day life. I have lived them, more than once.  I’m up for any challenge that is thrown at me … but I feel like it’s 1985 again … ya know, minus the technology part of the decade, that’s just added bonus at this point.  I feel like, LIFE is simple again.  Family is what is most important.  Yes, while friends play a very important socialization role in all our lives, and I miss mine terribly … BUT, if I’m being honest … I’m still okay with being home, in “quarantine”, with my loves.  I almost feel like a hypocrite, because I post on how I want shit to go back to “normal”, but I think I’m all right with this new normal.  For the love of God, just don’t take away my lake this summer, and no one will get harmed! Ha!

Another thought … I’m almost afraid that when life does go back, I may be sad.  I will miss my husband being here ALL THE TIME, when at the beginning, quite frankly, that scared the crap outta me.  I’m afraid that all the conversations I’m having with my children, will go away … again.  I say again, because when you are at a certain stage with your children, you are driving them EVERYWHERE.  Those car ride coversations … ahhh, there really is nothing like them.  Once they get their license, they are driving themselves … All those little, but more than meaningful conversations, went away.  Now that we have all been back together, it’s been wonderful having those conversations again.  Having my son’s sweet, handsome face in my presence when he comes home from work, (yes … he is essential) has just been the light of my life.

Maybe I’m just getting older.  Feeling nostalgic.  Feeling the burn of kids growing too fast.  I needed to get these thoughts out on to paper.  I need for people to believe that everything will be okay.  It’s up to YOU to decide your future.  How you roll with your own friends and family.  I’m not here to judge anyone.  I’ve never been that person, anyhow.  You do you!  I’m ready to start our new normal.  I’m ready to hang around people again, in small doses, of course, but what I’m most ready for, and excited about, (and I promise you, this has been a long time coming), I’m ready to dedicate myself, a million percent, to making sure my kids feel the love they deserve.  There is nothing greater than feeling loved and appreciated.  I know that I’m already that person, but having lost, THE MOST IMPORTANT person in my life, almost two years ago, I haven’t really been the best version of me, that I know I AM!  I know this.  I accept this, and with this blog, comes the “new, OLD me“.

Thank you for taking the time to read this.

I hope it brings clarity to at least one person.

Open letter to my 21 yr old son

Dear Seany,

April 24, 2020 … It seemed like this date was SO FAR away, on April 24, 1999 … Twenty-one years, to be exact.  At that moment in time, it was hard to see past the moment, never mind 21 years.  You came into this world at a whopping one pound nine ounces … you heard me right … 1 pound, 9 ounces … 711 grams of pure baby bird, as I called you, since you were so itty bitty, and your skin was translucent, we could see every vein in your tiny little body.

SEANYNEWBORN

The doctor told me that I wouldn’t hear you cry, but to not worry, your lungs were hardly developed, and it was to be expected … I didn’t listen to them … I was too busy being positive ‘ol me … I had ZERO clues how “life or death” our whole situation was.  I was only twenty-three … 23!!!  That is TWO YEARS older than you are right now!!  Do you know how CRAZY that thought is to me?!  I was literally a BABY, having my own baby … my first child … my only son … the first one to call me Mommy, but most importantly, the very first brown eyes I had ever fallen in love with.  Bye the way … You cried.  It was the teeniest little wah, but you cried … They said you wouldn’t, but you did.  You showed them, and it was in that very moment, that I just knew you would be okay … I had NOT ONE worry, that you wouldn’t be anything. but FINE!

That being said …

I had no clue what life with a preemie would entail, but I was quick to find out.  I did not hesitate to quit my job, and move back home with my mom (while your father worked), because you needed me to make sure nothing got you sick during your first year of life.  You needed me to protect you … and I did, proudly.  Social media was not a thing back in 1999 … I had no way to show you off to the world … my miracle son.  It’s okay.  I have all those memories locked in a place that no one can destroy, or can take away from me … for they are FOREVER locked in my heart of hearts, a special place only a parent can understand.  I decided to write this “letter” to you, as something you can always look back on, and remember some of the things you and I have been through … together. Some I know you can’t forget, but I know there are way more, that you possibly couldn’t remember, so I’m here to tell you some of the special memories that stick out in my mind.  This way, in the future, you will always have this, to remind you, how much I love you, and remember how I’ve always been there for you, in a way that only a mother could be, for their child, unconditionally.  If I had to go back and do it all over again … I would, without hesitation … then maybe I could have been perfect, but please know, I really did my best … through EVERY phase of your life.

BLOG_Seany
My very first Mother’s Day 05/09/1999

No parent ever wants the day to come when they hear that their child is sick … or worse, that they have a condition that will forever shape their future … That day for me, was August 16th 2000 …

“Your son has cerebral palsy …”

Those are five words that, although I knew was a possibility, I never wanted to hear.  When a young woman finds out she is pregnant, the last thing that goes through her head, are the “what if’s” … “what if I have a miscarriage” … “what if my child is sick” … “what if this, what if that” … Well, I never “what if’ed” ANYTHING … I was young and highly optimistic.  I always tried to see the glass half full, so to speak. I was super sick my entire pregnancy with you, and I still managed to smile through it all.  I wanted NOTHING MORE, than to be a Mom, your mom … Thank you for choosing me.  Being pregnant, was my favorite thing in the world … even though 2, out of 3, of my kids couldn’t wait to get out, and one tried, but she was tricked into staying longer.  After you were born, and I had to go home, without you (you stayed 11 weeks & 2 days longer than me), I went back to work part time.  Everyone in my office couldn’t believe I was there.  “Why aren’t you with your baby?” … “How can you smile and be so positive?” … These were the two questions people asked me time and time again.  My response … “It’s simple … I can’t be with him every minute of every day. He has to sleep to grow, and get stronger, so I choose to be somewhere, where I feel productive and useful”, while you lay in the NICU, fighting for your life.  You were so strong, and still are.  Don’t get me wrong .. I would wake up, shower, drive to Morristown Memorial (it’s old name) … Spend 8:00am – 11:00am, with you, drive to work in Parsippany, work from 11:30am until 3:00pm, then I would drive back to the hospital, and stay with you until the nurses kicked me out!  Nurse Cindy was your special angel in the hospital.  When I wasn’t there, she was, and if she was off, she made sure whoever was there in her place, that they knew to take extra special care of you.  Do you remember when Marissa was born, and spent 3 weeks in the NICU at Morristown, we got to see your special angel, Nurse Cindy … She remembered who you were, and still wore the special necklace we gave her, when you were discharged from the hospital.

SEANYNURSE
Seany, and his angel, Nurse Cindy

Nurse Cindy retired the same year that Marissa was born.  A reminder that everything happens for a reason.  You were meant to reconnect with her, and through Marissa, we were able to see her again, and show her how far you had come, at that point.  It was right after your big surgery.  Do you remember that surgery?  I know you do.  You were 10, and in fourth grade (umm .. Marissa’s age now).  We had gone to a special place to have three hours of testing, to find out what procedures / surgeries, would help you to grow the best your little body could.  You never complained, not once.  You couldn’t wait to be “fixed”.  You were so self-conscious of your size, but never let it get you down, and if it did, you hid it well.

A few months after that testing, we found out that your right hip was growing inward, instead of straight, among many other things.  It was decided that you would have an 8 hour surgery, with 8 different manipulations of your body.  They had to break your right hip, rotate it out, and put a plate there, until it fused back together, which took a little over a year, and then had to have another surgery to remove that plate.  They had to stunt the growth in your left leg, so your right leg could catch up.  They did that by putting an ‘8 plate’ in your left knee.  I believe it took two years, for your legs to be even, and then you had to endure one last surgery, to remove the ‘8 plate’, so your leg could continue to grow.  That was your last surgery, besides your tonsils getting removed.

The day of your big surgery, 9/21/2009, you were so brave.  I can now tell you that I had never been so scared in my entire life, not even when you were born.  I was told that my baby boy was about to endure the hardest 12 weeks of his life … HA! I literally laughed at that … 1, because you had already endured those 12 weeks, when you were in the NICU for exactly that, 12 weeks, and 2, because you’re my son, and I knew that you were already a fighter.  From day 1, I have told you that CAN’T, is NOT in your vocabulary … YOU CAN do whatever you want, as long as you try your best … YOUR BEST, not everyone else’s best.  You are amazing. Dr. Rieger, one of the greatest dr’s of all time, had wanted to body cast you after your surgery for a minimum of 6 weeks.  He made a last minute decision, to NOT body cast you, because he said, “If I know this kid, it will only hinder his recovery” … and he was right!  You had to learn how to walk again … We were told that it would be at least 12 weeks before that happened … but to our surprise, and YOUR determination, you walked SIX WEEKS before you were supposed to!! ROCK STAR!!

It nearly broke my heart to watch you go through this transition in your life, but again, in my heart of hearts, I knew you would be okay … The day you finally took your “first steps”, for the second time, in your life … I cried (I cried the first time too).  My heart was so full of pride for you … YOU CAN WALK, because YOU were determined to do so.  That determination isn’t something you can teach someone … it comes from within … either you have it, or you don’t, and you do.

SEANY21
Field Day 2010

Do you remember Field Day 2010?  I do.  About nine months after your big surgery, you had field day … You didn’t care how much smaller you were than everyone else … You didn’t give up, you KEPT UP … I had just given birth to Marissa like 10’ish days before field day.  I was there as a volunteer, and I remember thinking how lucky I was to have you for my son.  Determined to not let anything get you down.  You taught me about resilience … that no matter how many times you got knocked down, you always got back up.  I hope you take that with you into your adulthood.  There are some things that just can’t be taught, that you were naturally gifted with … Never forget that.  When you get knocked down, get right back up.  YOU … can do … ANYTHING! Except the military … you CAN’T do that, but that’s not your fault. LOL

When I started to write this, I had very different intentions of what I wanted to write, but once I started, this is where it took me.  I want to share one more, very special memory that I have, that I know you cannot remember.  Before your father and I divorced for good, we separated.  We stayed with Grandma in Hopatcong.  Morgan was just a little itty bitty baby, and you were 2 1/2, but still super tiny.  You loved to dance with Mommy, and it was seriously the highlight of my day … No matter how sad and empty I felt, you were there to make me smile over and over again … Our favorite song to dance to was, ‘God must have spent a little more time on you’, by NSync … I’ve been listening to that song all week … crying.  Not because I’m sad, but because back then, it was so hard to see past each day, being that every moment, every breath you breathed, every ounce you gained, was a sign that you were REALLY going to be okay, and now that we have gotten through all those surgeries, all those therapies, botox injections, casting on both legs, the list is endless … I’M SO DAMN PROUD OF YOU, and the only way for me to show you, is to write to you.  There is so much more I want to say, but if I’ve done my job, as your mother, you already know.

Happy 21st Birthday, kiddo … I hope you know how much I love you, and how I will always be here for you, no matter what … THIS I PROMISE YOU! PS … It was 21 years ago, today, that I fell in love with the biggest brown eyes, I’d every seen!! Cheers!!

SEANYMOMMY

Love,

Mom

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Just One More Day

I knew you were tired

I knew you were sick

But still what I’d give

For just one more day.

Cancer sucks.

For just one more day

To see your sweet smile,

Your face …

To hear you giggle,

Or whole heartedly laugh.

That laugh.

For just one more day

To hold your hand,

To have our conversations

About everything,

Or nothing at all.

Those memories.

For just one more day

A ride in the car

Listen to Stern

Laugh … just laugh …

And no longer cry.

For just one more day

To take away the sickness

For you to be healthy

And happy … like the

Good old days.

Memories for a lifetime.

For just one more day

And then another …

… and another

I’m selfish, you see

I wasn’t ready

To let you leave.

I need you.

I had to be strong

For you

My kids

My husband … Myself.

I wasn’t ready.

I told you it was okay.

For just one more day

I want you to be strong

Full of life … love

Most of all … compassion

Just one more day.

For just one more day, Mommy

I wasn’t ready,

but I knew you were.

I’m sorry I lied.

Bad liar.

I lied to my mother,

but I’m sure she knew

I lied, then I watched

As I saw her wings …

They grew.

For just one more day

To make sure

You knew

How very much

We all loved you.

I know you knew.

Just an excuse …

I’m selfish.

I’d give anything …

For just one more day.

Holding On.

I have a child that has been driving for almost 2 years, a boy.  I also have another child with a permit, and will get a driver’s license in July, a girl.  She always wants to drive, and I get it … I was 16 once upon a time, too. She’s a very good driver … Actually, she’s such a good driver, that she “kindly” tells me how to drive, at times … yeah, it’s impressive! <insert heavy eye roll>.  

That being said, why do I have such a hard time handing her the keys, and just letting her drive?!  Things would be a lot less “yelly”, if I just gave her the keys, every single time we have a place to go, but I don’t … and if I’m being honest,  I won’t.  Because after a lot of soul-searching, I have come to the conclusion, that since I cannot control the hands of time, I can control whose hands the keys land in.  She has the rest of her life to drive, I only have three months left to be her chauffeur, before getting a car of her own, and ONLY a little over a year, before she graduates high school, and starts her own life.  I know it sounds dumb … I know she should be practicing … and she does, just not as much as she wants. Once she has a car of her own, and the “freedom” to come and go, I’m pretty sure she’ll go, more than she comes, and I’m okay with that, at that point in time. I am the person who likes to celebrate growth and milestones, and very much looks forward to a reason to celebrate my children. I try to not be overly sentimental, however, it’s a different set of emotions, that is so unexplainable to parents who haven’t been here yet.  Knowing that the time is coming for my older two children to spread their wings and fly, is a lot to handle.  As much as parents “look forward” to empty-nesting, it’s a wee bit scary for this mama. I feel secure in how we’ve raised our children, to be great products of society, but have I really done enough?!  Will my “life lessons” resonate with them … Will they remember my words when it’s time to make an important decision?!  

Oh my goodness … Have I done enough?!  

It’s a scary reality knowing that your kids will be on their own, making grown up decisions, making mistakes, hopefully learning from those mistakes, and growing from them.  My daughter has this false sense of reality, that as long as you’re doing the right thing, everything is peachy keen. In a sense, yes it could be, but you never know what bumps in the road could arise, what crazy forks in the road you will come in contact with, and have to make a decision … LEFT or RIGHT?!   Have I done enough, have I said enough, have I taught them enough?!

At the end of the day, and in my defense (wink wink) … I know she’ll be okay … I have been in the car with her enough, to know that she will be just fine.  She thinks she neeeeeds to practice, I know that even with all the practice in the world, it doesn’t stop all the assholes that ARE on the road, and as long as she’s paying attention and doing the right thing, she will be fine.

For now, I’m holding on to the little girl who never wanted to leave my side … the little girl who couldn’t let me leave the house without her being in tow … the little girl that I have a bond with that no one can touch … the little girl who used to sleep in my bed … the little girl who looked at her mama with those green eyes …


…  the little girl that I am just having a hard time, letting go!!

        The end.

 

 

Unconventional ~ Part 3.

It’s the little things, that make a huge difference …

Sometimes you win, and sometimes you lose, right?! Right.  My “conventional marriage”, was finalized in divorce, at some point in Early 2004.  We brought another child into our marriage in July of 2001 … my only full-term baby (that’s right, in 2010, I had another premature child, 6 1/2 weeks early), and even she wanted to be born six weeks early, but doctors were able to stop my contractions .. with a little bed rest, I was able to hold her in until 39 weeks … July 2, 2001, it’s a girl … 6 pounds, 6 ounces, at 6 am … Hmmm … you said a girl, right?! Not the devil?! (Again, I joke … sorta)

My ex-husband started cheating on me in November of 2000 … That’s right … You do the math!  Yet, I still fought for what I thought was mine … I lost, but eventually, when I realized he got another person pregnant, I won.  I won my freedom from him, back … I no longer had feels for him the way a wife should have for her husband … Soooo …

byefelicia
Photo creds: memecrunch.com

In January, 2003, I moved my children and I to Hickory, NC.  I was no longer a wife.  I had a new title:  Single mom … with nowhere to go.  My mom, and my brother lived there, so it made sense.  We spent about 6 years there.  I have nothing, but wonderful memories, and few close friends that will be cherished forever.  I do believe it was when my older two kids were happiest in life, if I’m being 1,000% honest with myself.  It’s also where, for four years, twice a year, my son was injected with botox injections, in both legs, and then casted (to stretch the tendons in his calves and ankles) for 6 weeks, each time.  Even though his cerebral palsy only affects the right side of his body, the doctors felt that doing it to both legs, at his age, would give him an “even” feeling.  Along with the botox, came extensive, intensive, physical and occupational therapies, 2 – 3 times per week, during these four years, and beyond. I could sit here and list the numerous procedures and therapies my son has had to endure, but I can’t remember them all.  There have literally been hundreds, and if anything, I’m under-estimating!

Single mom, 2 kids … my world … not such a bad title to hold.

I seem to have forgotten to mention what exactly caused my son to develop cerebral palsy (CP) … At birth, he suffered a Grade III, out of IV, bleed, on the left side of his brain, affecting the right side of his body.  In other words, he had a stroke. Given too much oxygen at birth?  Maybe.  However, for all the things that SHOULD be wrong with him, he is truly blessed, and a FUCKING MIRACLE!!  Through the years, I have seen many kids born at 26, 27, 32 weeks.  I have also seen many born at full term, with cerebral palsy, requiring a wheelchair, having no speech or any motor skills … I KNOW HOW LUCKY WE ARE!!! It’s trying to teach a kid with a severe disability, just HOW LUCKY HE IS!!  Even though I have ingrained, in my son’s brain, that CAN’T isn’t in his vocabulary, I still struggle with showing him that he fucking CAN!!

He can do anything he wants in life … He may have to work a little harder, but he FUCKING CAN! (He’s almost 19, so I don’t feel bad swearing at this point).

In 2008, I decided that my ex-husband needed to be in our kids lives more.  So what does every sane, normal person do?! Oh … I upped, and moved back home to New Jersey, in August.  This whole section of life, is a whole other blog! wink wink!

August 2009 … Children’s Hospital Of Philadelphia (aka CHOP) … 

My son had some testing done at CHOP, to decipher exactly what could be done, surgically, to help aid him in his growing years.  You see, it was these tests that clued us in that his right hip was growing in, instead of straight, causing his right leg to be extra tight, shorter than his left leg, and caused him to tippy toe his right foot for many years, walking with an EXTREME limp.  What brought me to this point, as his mother?

                                               Mean people! Cruel fucking humans.

Earlier that year, in the Spring, my son wanted to play baseball … a great little athlete, he was (is) … even with his “gimpy limp”.  He had (has) an arm on him, like you wouldn’t believe.  It’s a damn shame that some people have to be complete, fucking assholes their whole life, and a mother, at that.  Being that we were new in town … No one knew that I was his mom.  I was so proud of my kid for joining a team, where he hardly knew anyone.  The kids were pretty accepting of him … 3rd graders are still sweet!  The first time my son was up to bat, he hit the ball … AWESOME! … and as he ran to first base … Cheering him on, I overheard another mom question who my son was … (in my best snotty voice) “Whoooo is that kid?! Isn’t he considered a liability?!”.

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NOW, in my best Mama Bear voice, “I’m sorry … WHAT?! BITCH! … THAT is MY kid … He is NOT a liability … he is a fucking miracle, with a heart of gold, and a smile that would melt your cold ass heart!  He has cerebral palsy, and has EVERY right to be here, just as much as your perfect little liability, er … son does!”.  ((GTFOH!!))

Can you believe the audacity of some people?!

September 21, 2009 … Morristown Memorial Hospital … Surgery Day!

 

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Seany, pre-op!

Look at that sweet, sweet face!  How could you not fall in love with this kid?! His big brown eyes, super long eyelashes, and a smile that just makes everything okay in the world!  Side note: I love his smile so much!!

THIS … was the scariest day of my life.  My baby boy was about to endure EIGHT procedures, in EIGHT hours, and while my memory fails me to know the exact terms of each procedure, I can give you the synopsis … Basically, the doctors had to break his hip, rotate it out, put a temporary plate in (which was removed a year later, during another surgery), while it fuses back together, along with lengthening his groin muscle, heel-cord surgery, stunting the growth in his left leg, so his right leg can play catch-up (those tools were called 8 plates, and they too, were also removed, in a separate procedure, once his left leg caught up, about 2 years later) … that’s five … the other three things were minimal.  He was supposed to come out of surgery in a body cast, for 6 weeks.  It was a last-minute decision, by the orthopedic doctor, to NOT cast his body … Because he knew my son, and he knew it would only hinder his recovery … and he was CORRECT!!

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Sean, about two hours after surgery.

Again … Look at that face … all drugged up, and still has a smile for his mama! GOD, I LOVE THIS KID! So, now that we have gotten through the surgical aspect, now starts the long road to recovery … A full year recovery, and then some.  He had to learn how to walk again.  “It’ll be a good 12 weeks, before he’s ready to start to walk,” Dr. Rieger said, “However, I decided to not body cast him, in hopes that he may walk sooner.”

And that he did!  He walked 6 weeks before he was even supposed to start trying! “YOU ARE FREAKING AMAZING!”, I would tell him time and time again.  “There isn’t anything, YOU CAN’T DO!”, would roll off my tongue, over and over.  We went through a full year of physical therapy, and unless you knew he had CP, you would never know it.  Mission accomplished!

Fast forward to sixth grade … Ahhhhh Middle School!!  Difficult transitions to get used to.  You’re expected to do more for yourself in school, change classes, etc.  When Sean started middle school, we lived in a neighboring town, to where we live now.  After the first marking period, his teachers were all telling me that he needed extra help, or maybe he was a resource kid … a kid who needed help in every aspect of school.

WHAT are you people telling me?!  I have NEVER had a problem with his schooling, except in 4th grade, but that’s when he had his big surgery, and got a little behind.  He was totally fine in 5th grade, when his lowest grade was ONE C, the whole year?! I literally left there in TEARS!! Who the hell wants to hear that their kid is resource material?! NO ONE, but here we were!  Because of his cerebral palsy, he was always being tested, and was always “over testing”.  They could never find any learning disabilities … EVER!

Other circumstances in my life, caused us to move from that town, to the one I live in now, allowing my son to change schools in the middle of 6th grade.  He did okay that year.  Seventh grade, we struggled with some bullying and grades … Of course, I thought it was the bullying that was causing his struggle with academics.  WRONG! In 8th grade, yes EIGHTH grade … it was his Math teacher, who finally “heard” what he was trying to say. Long story, short, it was found that he had a terrible processing speed.  So things that should normally take you a few seconds to answer, would take him a minute or two … or longer … therefore resulting in a documented learning disability.  The poor kid was struggling for years, but didn’t manifest, until he had to do things for himself … such as MIDDLE SCHOOL!!  I felt like the worst parent ever … for pushing him so hard to do better.  His step-father and I really didn’t accept anything, but his best!!  To our credit, every teacher, and counselor has told us that if it weren’t for our “push”, he wouldn’t be where he was at that point.

The very first day of 8th grade, he had broken his “bad” leg, in two places, from a little spill on his dirt bike … Here we go again … Getting behind in school, and MONTHS of physical therapy.  I remember when Erica, his therapist, asked me what my goal was for him … without hesitation, I said, “I would like to see him run … properly.”

It’s the little things in life, that people without any type of disability take for granted.  I had never seen my son run with both arms at his side, pumping back and forth. Instead, the left side worked “properly”, while his right side flailed in the wind.  Although cute, he was about to enter the next four years of his life, in high school …

It’s the little things, that make a huge difference, and the day came …

December 18, 2013 … Drayer Physical Therapy, Sparta, NJ

I saw my son run, like a person without CP, for the first time in his life … LIKE A BOSS!

Tears roll down my face, and I’m reminded, we’ve already come so far.

 

 

 

 

Unconventional ~ Part 2.

I heard the sweetest little “Wahh!” …

April 24, 1999 … 7:15 am … Trying to place an epidural, in a spine, on a body that has gained over twenty pounds of water weight in less than three weeks, is proving to be near impossible.  I was “stuck” in the back about five or six times, before the anesthesiologist said,

“If I can’t get it this time, we’re gonna have to put you under, and do the c-section while you sleep.”

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Photo creds: Memegenerator.com

“Ummm … there is a chance that my son won’t live … You WILL get it this time, because I want to see him alive, even if only for a minute!” (Wow! Look at me! Haven’t even met my son, and I’m already a Mama Bear!) With that, the epidural was inserted properly, and within minutes, the doctor who delivered my son, Dr. Yvonne Thornton, entered the room, and said …

“Now, please remember, that his lungs are just now developing. You will probably not hear him cry, when he is born.  This is normal.  We were only able to give you one steroid shot to help his lungs, versus the two shots, that you would normally get.  We are running out of time … for you, but I assure you (in her most sympathetic voice), even though you probably won’t hear him cry, technology has come so far …”

She continued on, but that’s all I really heard …  Technology?! WTF does technology have to do with MY SON, and his premature lungs … Actually, I remember a nurse saying that he was so early, that it wasn’t even considered premature, but rather … immature.  HA! A title he still holds dearly, to this day!!  (I joke … sorta)

April 24, 1999 … 8:54 am … I heard the sweetest little “Wahh!”, that I have ever heard in my entire life!  “It’s a boy … One pound, nine ounces, 12 1/2 inches long, apparently with a better set of lungs, than we anticipated!”

I will never forget that sound.  I have it on lock down in the memory banks of my heart, and my brain … I will never forget his first, tiniest of whimpers, and the thoughts that scattered through my brain …

That’s my boy!
Stronger than even the doctors thought!
A fighter from birth.
Strength you didn’t know you had.
YOU HAVE PURPOSE!
You got this, kiddo!
I will never leave your side … EVER!
THAT, is my promise to you.

 July 30th, 2000 ~ One year “corrected” age ~ When you have a child that is born three months early, you learn a lot of new jargon that you’ve never heard before. You also become super acclimated to the NICU, and you start to believe that you could be a nurse, with all that you have learned.  Especially when your child is there for 12 weeks.  Today’s word is “corrected age”.  He’s 9 months old, 6 months, corrected age. For ONE YEAR, and three months, I had to use this term.  It was frustrating.  Unless you know, you DON’T know.  To the mom who has her babies when they’re supposed to be born, it may sound silly to you, that I complain about this … It seems minimal, in the grand scheme of life, however … it’s ANNOYING … just another way to point out that my kid is different from yours … like I said … ANNOYING, and perhaps, dare I say “judgey”?! The only positive, is that if someone overheard me saying “corrected age”, it brought on the conversation, and I was happy to talk about it.  Knowledge is power, right?!  Getting back to my point … In August of 2000, I had to bring my son for a developmental check up.  I had noticed that he was favoring one side of his body, over the other.  When he crawled, at nine months, he would over use his left side, like an army crawl, but the left side did the majority of the work.  After a three-hour evaluation, the results were in …

“Your son has a condition called Hemiparesis, which affects his right side.”

In layman’s terms please …

“Your son has Cerebral Palsy.”

 

 

 

 

 

 

Son, my number one.

“We’ve already won”

Do you know what it’s like to be me
Happy, easy-going, loving, carefree
Your vision of my face
You can clearly see
I’m smiling, I’m joyful
I’m bursting with glee
PLEASE … Do not be mistaken
While I smile for you
Inside, my heart is breaking
Broken … shattered, really
Somehow I’ve failed you, my son
Somehow I’ve failed you
My number one
Tell me what it is that
I haven’t done
You see, in my head
We’ve already won
From where you were
To where you are
Do you even realize
You’ve come so far

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Photo circa Mother’s Day 1999

Dig deep, my son
For you will see
That pushing yourself
Will set you free
Can’t is a word
You’ve always been told
To eliminate from your mind
No matter how old
Remember the time
You knew how to walk
Then surgery stole it
We sat, and we talked
“Mommy, oh Mommy
This isn’t fair
Why did God create me
Just to make me wear
Braces on my legs
I’ve been casted too
Procedure after procedure
Please tell me it’s true
I’ll walk again, Mommy
Maybe one day soon
Tell me I can, Mommy
Please sing me a tune”
Sweet melodies
From my heart they would come
Along with my song
I could hear him hum
My sweet young man
You have come so far
I wish you could see
Beyond every scar
That God makes no mistakes
You do have a purpose
For heavens sake
Never give up
My eldest son
Never give up
My number one

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Senior Portrait circa 2017

 

 

Take my arm … 

Instead of hers.

Take my arm.
Instead of hers.
With each poke and prot
She winces, it burns.
TAKE MY ARM!
Instead of hers!
I feel her pain.
Literally.
Can it get worse?
I bow my head,
As a tear falls down.
I say a prayer.
I ask the Lord, why?
Why her?!
What did she do?
To deserve this misery.
To have this placed upon her.
What did she do …
you ask?
She raised two children.
On her own.
For the most part.
We had incredible grandparents.
Whom aided.
A lot.  Continue reading “Take my arm … “

Into The Deep …

Take me deep … Keep falling … Hold me!

**Good Morning Friends … I have submitted this piece to be a part of a bigger audience, next month. Please cross your fingers and toes, that I’m one of the lucky ones to be chosen to be featured with a Guest Submission on The Ink Owl’s Page … I’ve included the link to their page, so you can check them out, and or submit something of your own!**

The prompt, for the submission, from the page, is as follows:

” I would like submissions to contain an essence of fantasy as well as reflect this prompt”:
“Into the deep I plunge.”

I’ve included that, so my poem, makes more sense, as you read it.  Enjoy!  As always, constructive criticism, is more than welcome! ;o)

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Into the deep I plunge …
The deepest, darkest place
I can find … in my brain,
Yet … nowhere to be found.

The light, the one that once shone
From within, is beckoning to be heard ….
To be seen … to be loved.

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Into the deep I plunge,
Happily Ever After…
One step forward,
Sadly,
Two steps back.
I vowed FOREVER!
Is forever now?

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The deeper I plunge,
The further I fall …

… into GRACE?! …

A space forgotten by me,
Forgotten by all!

Shame on them, shame on me!

Take me deep …
Keep falling … Hold Me!
Let Me GO! … Take my hand,
Fall with me …..

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Into the deep I go …
Where? What? Why? …

… HOW?! …

How have I fallen…
This deep, without letting go?

Further … Slower … Clinching

TIGHTLY!

Oh … I see now … REJOICING!

You never let go …

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Into the deep I plunge …
It’s warm … welcoming,
Inviting … I like it here …

Come with me … You’ll love it too.

Hold my hand, don’t let go! For …

Into the deep WE plunge ……….

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Serendipity.


I wasn’t looking ..
for someone like you;
I wasn’t looking ..
for anyone at all.
You came into my life ..
out of the blue;
And did something I thought ..
no one could do.
Like a vortex tornado ..
you shattered my wall;
A wall raised by me ..
for protection from all.
You are so different ..
I sense your loyalty;
Don’t ever give up ..
for it’s called, Serendipity!